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Saturday, October 31, 2009

It took me a long time, but I finally figured out why October was chosen for "breast cancer awareness" month. There is nothing pink in October - things are turning gold and brown and the air turns cold. If a pink month was to be picked, May, would have fit the bill.

But, just like October, there is nothing pink about breast cancer either. It isn't frilly, pretty, delicate or particularly feminine. So why is October "our" month?

Halloween.

All hallow's eve. The night before All Soul's Day, a day honoring the dead. Now I get it.

In the 31 days of this year's pink hell month, I personally know of five women who have died from breast cancer. Five women who won't be answering the door tonight handing out treats. Five women who won't be fixing costumes and drawing cat whiskers on their child's face. Five women who were given a pink ribbon last October to make sure they were "aware" of breast cancer. Trust me. They didn't need reminding. The families they left behind won't ever forget.

This year, as you hand out your miniature sized Snickers bars, think about what is the real truth of breast cancer awareness month...

We do need to make sure that women know to get early mammograms and follow-up appointments. But we do not need to fatten the bottom line of gigantic corporations who hijack breast cancer and use it as a marketing tool to sell more product by simply slapping a pink ribbon on the box.

When you give to a cause, really know where it is going to. What will they use the money for? Who benefits? How much did they spend on the ad campaign in comparison to how much actually is donated.

Our cure is out there. It is in a research lab right now. Support direct research. Support those organizations that directly benefit women enduring breast cancer treatment. If you are going to buy a pink pot holder, buy it because you like the color, because the majority of pink merchandise is not benefiting breast cancer, it is an advertising ploy.

It is hard to look at the mock grave yards set up in neighbor's front yards when you remember how many women have been buried this year. Halloween has made Breast Cancer Awareness month real. Finally.

Wednesday, October 21, 2009

The American Cancer Society has lobbed a deadly volley over the bow of SS Cancerland...

"In Shift, Cancer Society Has Concerns on Screenings" New York Times/by Gina Kolata

The American Cancer Society, which has long been a staunch defender of most cancer screening, is now saying that the benefits of detecting many cancers, especially breast and prostate, have been overstated.

It is quietly working on a message, to put on its Web site early next year, to emphasize that screening for breast and prostate cancer and certain other cancers can come with a real risk of overtreating many small cancers while missing cancers that are deadly.

“We don’t want people to panic,” said Dr. Otis Brawley, chief medical officer of the cancer society. “But I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated.”

Prostate cancer screening has long been problematic. The cancer society, which with more than two million volunteers is one of the nation’s largest voluntary health agencies, does not advocate testing for all men. And many researchers point out that the PSA prostate cancer screening test has not been shown to prevent prostate cancer deaths.

There has been much less public debate about mammograms. Studies from the 1960s to the 1980s found that they reduced the death rate from breast cancer by up to 20 percent.The cancer society’s decision to reconsider its message about the risks as well as potential benefits of screening was spurred in part by an analysis published Wednesday in The Journal of the American Medical Association, Dr. Brawley said.

In it, researchers report a 40 percent increase in breast cancer diagnoses and a near doubling of early stage cancers, but just a 10 percent decline in cancers that have spread beyond the breast to the lymph nodes or elsewhere in the body. With prostate cancer, the situation is similar, the researchers report.

If breast and prostate cancer screening really fulfilled their promise, the researchers note, cancers that once were found late, when they were often incurable, would now be found early, when they could be cured. A large increase in early cancers would be balanced by a commensurate decline in late-stage cancers. That is what happened with screening for colon and cervical cancers. But not with breast and prostate cancer.

Still, the researchers and others say, they do not think all screening will — or should — go away. Instead, they say that when people make a decision about being screened, they should understand what is known about the risks and benefits.

For now, those risks are not emphasized in the cancer society’s mammogram message which states that a mammogram is “one of the best things a woman can do to protect her health.”Dr. Brawley says mammograms can prevent some cancer deaths. However, he says, “If a woman says, ‘I don’t want it,’ I would not think badly of her but I would like her to get it.”But some, like Colin Begg, a biostatistician at Memorial Sloan-Kettering Cancer Center in New York, worry that the increased discussion of screening’s risks is going to confuse the public and make people turn away from screening, mammography in particular.

“I am concerned that the complex view of a changing landscape will be distilled by the public into yet another ‘screening does not work’ headline,” Dr. Begg said. “The fact that population screening is no panacea does not mean that it is useless,” he added.

The new analysis — by Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco, and director of the Carol Frank Buck Breast Care Center there, and Dr. Ian Thompson, professor and chairman of the department of urology at The University of Texas Health Science Center, San Antonio — finds that prostate cancer screening and breast cancer screening are not so different.

Both have a problem that runs counter to everything people have been told about cancer: They are finding cancers that do not need to be found because they would never spread and kill or even be noticed if left alone. That has led to a huge increase in cancer diagnoses because, without screening, those innocuous cancers would go undetected.

At the same time, both screening tests are not making much of a dent in the number of cancers that are deadly. That may be because many lethal breast cancers grow so fast they spring up between mammograms. And the deadly prostate ones have already spread at the time of cancer screening. The dilemma for breast and prostate screening is that it is not usually clear which tumors need aggressive treatment and which can be left alone. And one reason that is not clear, some say, is that studying it has not been much of a priority.

“The issue here is, as we look at cancer medicine over the last 35 or 40 years, we have always worked to treat cancer or to find cancer early,” Dr. Brawley said. “And we never sat back and actually thought, ‘Are we treating the cancers that need to be treated?’ ”

The very idea that some cancers are not dangerous and some might actually go away on their own can be hard to swallow, researchers say.

“It is so counterintuitive that it raises debate every time it comes up and every time it has been observed,” said Dr. Barnett Kramer, associate director for disease prevention at the National Institutes of Health.

It was first raised as a theoretical possibility in the 1970s, Dr. Kramer said. Then it was documented in a rare pediatric cancer, but was dismissed as something peculiar to that cancer. Then it was discovered in common cancers as well, but it is still not always accepted or appreciated, he said.

But finding those insignificant cancers is the reason the breast and prostate cancer rates soared when screening was introduced, Dr. Kramer said. And those cancers, he said, are the reason screening has the problem called overdiagnosis — labeling innocuous tumors cancer and treating them as though they could be lethal when in fact they are not dangerous.“Overdiagnosis is pure, unadulterated harm,” he said.

Dr. Peter Albertsen, chief and program director of the urology division at the University of Connecticut Health Center, said that had not been an easy message to get across. “Politically, it’s almost unacceptable,” Dr. Albertsen said. “If you question overdiagnosis in breast cancer, you are against women. If you question overdiagnosis in prostate cancer, you are against men.”

Dr. Esserman hopes that as research continues on how to advance beyond screening, distinguishing innocuous tumors from dangerous ones, people will be more realistic about what screening can do.

“Someone may say, ‘I don’t want to be screened’ ” she said. “Another person may say, ‘Of course I want to be screened.’ Just like everything in medicine, there is no free lunch. For every intervention, there are complications and problems.”

Dr. Esserman is correct. And she is fighting for breast cancer patients more than anyone I have seen.

The ACS message is deadly. It makes it seem like we do not need screenings. It is not that simple. I spoke with Dr. Esserman on Saturday and she told me that there are tumors that can grow between our "regular screening" and those are the most dangerous because they are so fast growing. She said we need to be even MORE VIGILANT about protecting ourselves. She runs the I-SPY clinical trials and the criteria to be in those studies are a tumor >3 cms. These tumors did not grow so large because of neglect by the woman, they grew so large because they were so aggressive and happened between mammos.

What does that mean? We have to find a way to develop a better screening - more MRIs or U/S screening to fill the gap between mammos and what mammos can miss!

But what does that require? More money. Higher costs. Does that fit into this climate of cut care to the bone so everyone can have "universal coverage?"

Is the ACS politically motivated now? Do we want to take the chance of missing deadly tumors because it is now politically correct??

On behalf of the women who died just this month, the month of pink shame, fight like hell to make sure you get screened every way possible. Don't let them tell you that you are too young, have dense breasts or if it hurts it isn't cancer... do not blindly follow politically motivated press releases! We are not sheep we are women fighting for our very lives.

Monday, October 5, 2009

You will find our new programs designed to save the lives of young women, especially African American women, improve the lives of those already diagnosed, empower women to take charge of their care and basically, fight and survive the beast we know as breast cancer.

IT AIN'T PINK.IT IS REAL.

And we are here to conquer it.

To all my sisters who have gone before me, to all my sisters who stand with me,

This is it. Our time is now. We have worked long and hard and now we are ready to take action because:

Thursday, October 1, 2009

When it first happens you don’t cry. You can’t. The shock of it all leaves you doubled over in terror. You don’t have a cogent thought. Your mind bounces from one horrid scenario to another. The what-ifs you create in your mind make you feel as if you will drown in them.

Then they come. First, your family and friends ask you what will happen next. You have no idea and that brings on more fear. Then, you see a new doctor who explains it all to you in a language that resembles English, but the words are unfamiliar, daunting, and terrifying. As they explain to you all the things they are about to do to you your heart begins to race. Between each pounding heartbeat, you plan your escape. You could leave this office. You could go to another town. No one would have to know. Then you remember, IT will come with you, follow you, stalk you and try to kill you no matter where you try to hide. So you give in and listen. You find yourself signing papers agreeing to have body parts removed, to have poison pumped into your blood and to have radioactive beams burn through your skin.

You know you will be forever and unalterably changed. Some things will return to normal, but you will never, ever, be the same woman before it happened. There is a loss of innocence, of peace, of self, of the ability to dream.

And then it happens. You see a child and the tears finally come. If it is your child you cry because of the future, how much longer will you be their mom? What milestones will you be around for? And which ones will you miss? If you don’t have children you realize you have lost your chance. You won’t ever be a mom. The dreams you had as a girl growing into a woman have now been cancelled.

Each tear feels like it is washing away your capacity for infinite hope. Everything you touch has a caveat now. There are no guarantees. But you do what they tell you. You endure the surgeries, the chemotherapy and the radiation. You find a strength in you that you never knew you had. You do everything you can to stay healthy. You have saved your life, for now. But you saved your new life. The old you can never be reclaimed because she exists on a different planet. She didn’t worry about the future in the same way you do now. She worried about how many people would be coming to the house on Christmas Eve, you worry you won’t be there next Christmas Eve.

We are stronger than other women because we were forced to be. We had no choice but to be brave. It is like being in the rain. We were going to get wet anyway. Some women got lucky and had umbrellas, we were caught off guard. Our whole lives before IT happened seemed like a dream and with one sentence, we were awakened to a sharp and clear realism with no fuzzy edges to it. We wish we could go back to the dream of our past, but we know that will never be.

So we move forward. We find at our most fragile and terrifying moments that we are not alone in a vast, dark ocean. There are others, just like us, right there - reaching out their hands to us. We grab on and hold tight. Sometimes we don’t have to say a word because we simply know, with a single look, what the other is thinking. More join us. There is warmth and comfort and strength in our numbers. We may not have our old lives any longer, but we have our new lives with our new family and soon the war stories end about each of our battles, and you can hear faint laughter. You feel light again, human again. You share a story about work, someone gives you a recipe, another just found a great place to buy shoes. War talk turns into girl talk. We feel less dread. We find ourselves smiling more. Others have been through this and we can too.

When the talking stops, and a content silence falls over the group as we sit and muse about our lives, we discover something. There isn’t anything pretty, sexy or pink about what we just went through. None of us are wearing pink. We don’t have our lives wrapped in ribbons. If we need a blender we buy one that works well that we can afford, not one that a corporation will profit off our disease from.

After we have buried sister after sister who died because she ran out of options, or the poison attacked her healthy organs, or she was diagnosed too late for any intervention, we know that a strip of pink satin wouldn’t have helped them. The color of hope is in a test tube in a lab somewhere, someplace.

So when we are asked to lick a yogurt lid to cure our disease, we say, no, thank you. We will give our money to the scientist who is going to save our daughter’s lives. They need all the money they can get, not a token check that has been divided seveteen ways after 5% has “been donated to breast cancer.”

Real breast cancer is a nightmare. It isn’t cute, it isn’t trendy, it isn’t something that should be taken lightly. It is time for corporate america to stop hijaking this horrid disease as a marketing campaign. Your base is dying at the rate of one every eleven minutes.

It is fear, pain, loss, horror, strength and resilience. It is not cute. Pass on the pink toilet paper. Find an NIH lab and donate to the researcher working on ending this disease.

Because when you or your wife or your daughter gets diagnosed, the last thing you think about is pink.

Save the future of the women in this world. Cut the pink and give directly to research.

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The No Surrender Breast Cancer Foundation is here to help every woman who has ever been touched by breast cancer. We offer a 24/7 peer driven support forum, it is by survivor for survivor - for you.
Our comprehensive website has everything you need to learn about your cancer so you can make the best decisions for your care. We offer the latest information on surgery, reconstruction, chemotherapy, hormonal therapy and radiation and, most important, how to live the best life after breast cancer, because yes, there is life after cancer!
Our programs are designed to save lives through early detection, self advocacy, and changing the standard of care so that women can protect themselves.
For more information, please visit our website to learn about No Surrender Breast Cancer Foundation... hope happens here!